Help support Paige with her Chronic Illness

Hey Guys I’m Paige. I’m 25 years old living with a chronic illness since birth called hollow visceral myopathy. I have 2 peg tubes, ileostomy and as of today a Hickmans line (central line) and a picc line. These fresh lines are from an admission at RPA hospital Sydney in which seen me lost 14kg in the last 3 months becoming severely malnourished, chronic constant pain, low blood pressure, blood sugar dropping excessively and at the time of admission only weighing 39kgs. Drs aren’t quite sure of what has caused this whether it is small or large bowel related and have been running every test under the sun to try and figure it out. To which I still have quite a stay here in RPA and possibly more surgeries to find out and make a solution. One long term plan they have for me is going home on TPN (total parental nutrition) which essentially means I’ll be fed and get my vitamins and minerals through the picc or Hickman line not from the food I eat at home . Yep you heard it I’ll be having a drip at home for most of my hours through the night and some day. 

I know some people might be shocked to read this and have no clue I’ve had this going on in my life but I try to focus on living a happy life and not be the person people “feel sorry for” or have to tip toe around me because I have this condition and attachments on my body. Even when I am as sick as I am in hospital I still don’t disclose quite the extent that’s going on and don’t like to make people worry over me. I have been very lucky over the past 2 years to live somewhat of a normal life (sometimes to excessively) and I admit I often took my healthy life for granted because I have never been able to live the life I’ve always wanted. Sometimes I dwell and wish I didn’t.But it’s in the past now and I can only think of my future and to keep fighting and living this precious life even if I believe it isn’t fair the way I have to live it some of the time. 

I’ve made this page to reach out, I’m not one to ask for help and I’m not one to open up about this condition I’ve had since birth but I’ve finally found the courage to speak open about it. I’m scarred for my health and I’m scarred for my life at home I’ve worked so hard for. I’m really not sure how long I’ll be kept down here in Sydney and at the moment my family are sending themselves out of there pocket to come stay in accommodation near the hospital, to look after me day to day. Hold my hand through the tears and multiple procedures I’m having daily. Another thing in which is unknown and frightening for me is the costs of the pumps and supplies to get this nutrition into me. There will be specialist appointments and tests that I'll have to travel to Sydney for once I am home and getting TPN. Essentially another battle will begin even when I’m discharged from hospital.  I’m not asking for a handout but I’m asking for maybe some help to get me through this very tough time and place on my life at the moment. I’m stuck with this condition for life as there is no cure only a bowel transplant and that may not even be an option or fix, I dont want to burden myself or my family financially because of this difficult time so I’m doing this to ask for help, help to keep one weight off my shoulders, so I have some support from my family while I’m down here and support for when I get home. So please if you can spare and help me I would appreciate from the bottom of my heart. 

I would like to while I’m here thank everyone for the messages, the prayers l, the love I has been inundated with. I’m sorry if I haven’t replied but I’ve seen and felt the love just not always up for being on my phone or anything. 

•UPDATE•

Picc line lasted 4 days I’m now super swollen and there’s fear of a blood clot. Doctors come and informed me yesterday that my SVC (main vein to the heart) is blocked, I’m now being referred to cardiovascular surgeons for possible stents and other new remedies to try and open it back up. Ive also found out that the large bowel is causing my constant pain, and by constant pain I mean in tears almost not being able to control myself pain. Doctors are wanting to remove the large bowel but in that means it could

Jeopardise being a good candidate for a bowel transplant. It’s guaranteed i be going to and from Sydney for the SVC but the bowel is still unknown for the moment but what I do know is that I can’t live life going through this pain. We’re now having troubling managing the pain again I’m hoping I’ll get reviewed and something will happen to get me comfortable. Honestly guys I’m exhausted and I’m mentally drained from all of this information but I’m still here. I really need your help now more then ever though. 

-Paige xx